I have gotten quite a few emails about people suspecting Lyme, and what to do. I thought I would write down my thoughts in one place. Lyme certainly looks a lot like Multiple Sclerosis, and that may be why there is an increase in incidence in the diagnosis of MS. Certainly if you live in one of the official endemic areas (Sidenote: I think it is much higher in the other areas, but because it isn’t tested for, and no one knows about it, than Lyme is not diagnosed. For instance there are rumors of very high incidence of Lyme in Texas, but there is no testing done.) for Lyme I would highly recommend that you get good tests for Lyme, for everyone else I will drop to just a “recommend” to get good tests for Lyme. Since Lyme is the great imitator it can look like a lot of other diseases/syndromes (e.g. Chronic Fatigue, arthritis, MS, ALS, etc.).

CD-57 test from LabCorp (aka Stricker Panel). While this is not diagnostic for Lyme there is nothing else known to lower your CD-57 killer immune cells. Of course it is also possible to have Lyme without having a low CD-57. What is known is the Lyme seems to kill off the CD-57 cell; but why is not known. Regardless, if you have a low CD-57 than you have Lyme; keep getting tested until you get a positive result.
I have changed my thoughts on the CD-57 since this was originally written. It may still be very valuable but to what extent I am uncertain. I would still consider a low CD-57 indicative of Lyme.

Get good labwork for Lyme. Normally, doctors/labs only run the CDC criteria for an ELISA/EIA and then follow with a Western Blot if positive. Unfortunately, the ELISA/EIA is garbage, and the Western Blot isn’t always all that great either (and this is the reason I had an incorrect diagnosis for years). Also, for a lot of reasons, the normal labs do not do good testing for Lyme even with the ELISA/EIA & Western Blot. There are two good labs in the United States. The first is IgeneX, and they are almost certainly the best; unfortunately, they do not take insurance so this can easily cost you hundreds of dollars. The other good lab is MDLab. They are the lab I used, and seemed to do a good job even though the Western Blot came back negative (Side Note: they never sent me the band information, just a negative. Positive or negative make the lab send the band information so you can decide for yourself. I suspect that had I looked at the bands they would have been positive; they were just not the classic positive. I had a positive C6 Peptide so it was not necessary). Both labs will send you vials for the blood, and shipping materials for you to return the blood. You will need a doctor to order the tests and someone to draw the blood (note: they will need a centrifuge for a couple of the vials. Instructions come with the kit). For MDLab I recommend getting the Tick Borne Disease Test #420 (this includes quite a few tests for Lyme and coinfections).

Find a LLMD (Lyme Literate MD). The best way to find one is to join the Yahoo group Lyme-Aid and ask for a referral for your area/state. Lyme is relatively easy to treat if caught very early (i.e. at the time of, or before, the bulls-eye rash; assuming you get the rash). Lyme is very hard to treat once it enters the chronic stage, and it will require that you have a doctor that is skilled in treating the disease.

3/20/2007 Edit: Decided that there was no value in listing the doctor’s name so edited the post to just using a pronoun for the name

Extremely disappointed!!! I did not expect him, or any doctor in Texas, to be an expert in Lyme, since it is a rare disease here. What I do expect is that as a doctor you either do your homework on a given disease (Lyme), or you refer me to someone who is familiar with the disease. I can even accept that you would have to follow-up with me after consulting with some reference materials and other specialists. Possibly, he may be an acceptable doctor with diseases he is familiar with; just not with diseases he doesn’t. What I really object to is his radical unpreparedness and blissful ignorance for my case. Overall, I was left with the impression (based on a general attitude) that he is not enthusiastic about his work, and thus does little reading of journals, etc. to stay at the forefront of his specialty (I would think that my case could add a little spice to an otherwise same old routine). Some tidbits from Friday’s visit:

30 minutes late for the appointment (trying to ignore his previous indiscretion, and then again.) He was late because he was reviewing my chart (I was the only appointment today), and he arrived minutes after I did. I would expect an infectious disease doctor to review his upcoming schedule so he can prepare for any diseases that he might not be that familiar with, and so he doesn’t look like an idiot when talking about the disease. He obviously did not want to proceed down that route, and would prefer to look like an idiot. He has had my lab work and back pictures (Bartonella Rash) for two days, and my suspected diagnosis (Lyme) for a month. Let’s wait until the appointment to quickly read over the chart, and any old textbooks I have laying around.

In his first few sentences he made it clear that he had no idea about the C6 Peptide test, and the test’s significance. He said there are lots of “Mom and Pop labs” that do some weird tests. Of course this is not a weird test, and has been suggested as being the new “Gold Standard” for Lyme (although with criticism). Eriksgirl tries to explain the test with little success. He said he needs to call the labs director so that he can figure out what the test revels (like maybe it’s a positive test for Lyme disease!). Of course this should have been something he did before visiting with me, see #1.

The CD-57 test was also mentioned, and he said that has nothing to do with Lyme. Eriksgirl did not go into a description of why this level is important in assessing efficacy of treatment. Again see #1.

After discussing my symptoms, and that I am self-admitted in a light period at the moment, he thought there was basically no reason to think that I have Lyme and to question the diagnosis of Multiple Sclerosis. This was even after reading aloud the referral letter from my neurologist saying that there was “compelling” evidence for a potential Lyme infection, but an infectious disease specialist would have to make that determination. How we could see the exact same text two different ways is a mystery to me. He went on to say that a neurologist should be able to diagnose lyme disease based on the neurological symptoms (I guess so much for Lyme being the great imitator).

He went on to ask what I wanted to achieve by being treated for Lyme (e.g. take high dose antibiotics). Apparently the wrong answer was to not have Lyme. He said that treatment of Lyme is a clinical one (and to some degree I do agree, but with the CD-57 it is less so; secondarily I would think you would rely on diminishing Herxheimer reactions), and without anything to treat there are no objectives. No clinical objectives = no reason to treat with antibiotics. He thought it was better to treat the Multiple Sclerosis rather than worrying about Lyme.

He went on to offer a 3 week treatment of IV antibiotics to set my mind at ease. Eriksgirl noted later that apparently I am a hypochondriac, and he will treat my neurosis with 3 weeks of antibiotics to make it all better. I declined. (3 weeks of antibiotics would be insufficient for chronic Lyme anyways, which furthers my assessment that he doesn’t have a clue about treating Lyme). Secondly, who “hands out” high-dose anything if you don’t think the patient needs it?

Eriksgirl mentioned that we will be going to see a Lyme specialist in PA for a second opinion (can he be considered a first opinion?). He noted that he thought it was a “waste of money.” I understand his hubris because he is an such an expert in Lyme, knows what all the tests mean, and the proper treatment methodology for chronic Lyme so there is no need for a second opinion from a Lyme specialist (especially no need to see the doctor who recommended the lab and all the tests that got run by that lab).

I also noted that I was referred because of the recurrent rash that occasionally appears when when I am having problems (but definitely not always). He said that Lyme does not have a rash that appears with exacerbations; of course that was after I told him that it was (most likely) a Bartonella rash. He dismissed the rash as being Bartonella; noting that Bartonella does not have a rash (or so he seemed to indicate), and if I had Bartonella that I would have gotten over it by now. He also noted the Bartonella is not a tick borne disease; but instead is the disease of cat scratch fever. In the end he never suggested any cause for the rash simply leaving it that it was not a Lyme induced rash.

He also noted that Lyme would not cause abnormal MRI’s (e.g. lesions). The insinuation was that abnormal MRI’s would be one more indication that I have Multiple Sclerosis, and not Lyme. This was despite the fact that my neurologist referred me to him for this assessment (and the neuro personally mentioned that if I have Lyme I could be cured; meaning I was misdiagnosed).

He also noted that the treatment would be with Penicillin. That sounds like a fine choice, but from what I understand I will need to be treated with two antibiotics because an antibiotic that has good tissue penetration does not typically have good blood-brain barrier penetration and vice-versa (The International Lyme and Associated Diseases Society, p.6, Section 10); something I would expect and ID doctor to know. Then there will probably be yet a 3rd antibiotic to treat the Bartonella.

Endnote: Going in, I did not have high expectations that he would be able to help with the Lyme because of the rarity of the disease in Texas. It was a long shot, and it was worth a try. I was simply put off by his gross ignorance, apparent lack of interest in my case, and unwillingness to learn more about the disease. Overall this experience was for the best because I have been working on a list of questions to ask the doctor (which I did not have for the original meeting, so bizarrely it worked out for the best that he canceled) so I will be better prepared for future visits.

Eriksgirl went to the doctor’s office yesterday and got a better copy of the MDLab results to take to the infectious disease doctor today (rather than having a hard to read fax of a fax). The only difference is that you can now make out (barely) the positive in the abnormal column for the “Lyme Disease C6 Peptide by ELISA.” Also interesting is that I test negative for Bartonella, though I do get a Bartonella rash (^%$# Tests/Lab). I am sure I could get a positive Western Blot if I went to IGeneX, but I would prefer not to spend the money (and I will probably end up anemic if they draw any more blood ;-). Results:MDLab.Blog.pdf

I received the test results back from MD Lab today (finally!), and the C6 Peptide by ELISA came back positive. Of course, all other tests, including the Western Blot, came back negative (The lab sheets are borderline illegible. When I get a copy of the hopefully legible mailed report I will post that.). I have now completed the first phase to get a positive test for Lyme so onto phase 2.

Phase 2 – Treatment:
I have an appointment on Wednesday with an infectious disease doctor to discuss the Lyme/treatment. Hopefully he is skilled in Lyme, and can treat me. Secondarily, am I going to be able to get the insurance to pay for long duration antibiotics. I guess one thing at a time, and more news on Wednesday.

I received a call from the doctor’s office on Monday, and the Lyme Western Blot came back negative. I did not find that surprising, but wanted to confirm the results of the test myself. I had a count of 46 for the CD-57 test (which LabCorp bracketed that it was out of range; 60-360 is in-range); which seems to definitely confirm my suspicion of Lyme (but upon Eriksgirls talking with the Tick Borne Disease Center CD-57 is not a test that can diagnose Lyme). Regardless, the CD-57 gave me quite a bit of hope that this really is Lyme, and we just need the rest of the tests to agree. As already said, the Western Blot came back negative, but LabCorp did not include the details of which bands were reactive. Eriksgirl called and asked them to send the full report to the doctor so we can see if it really was indicative of Lyme, but I have not called to get those results. I suppose it is a long shot that the LabCorp Western Blot results will help, but we shall see.

He also added that tests for Lyme suck, but that I would need a positive test before I could be treated for Lyme. On a plus this lab he recommended is covered by insurance, and from their paperwork seem to be fairly familiar with Lyme.

Since I have taken so long to post this I have received the vials (2 yellow tops, and 1 tiger top) to send to MDLab. I also have an appointment with the doctor tomorrow to talk him into drawing the blood to send to the lab.

My ongoing investigation to see if I was misdiagnosed with Multiple Sclerosis.

Friday, February 9, 2007
I went to the neurologist last Friday to talk to him about the possibility of Bartonella and Lyme. I showed him my prior Lyme test results (the much less accurate ELISA test instead of the Western Blot) as well as the pictures of my back compared to these Bartonella rash pictures. After looking at the pictures he agreed that they looked alike, but did not remember Lyme looking like that (which it would not be Lyme rash). He referred me to an infectious disease doctor to better investigate the possibility of Lyme/Bartonella. Overall, I was disappointed because I wanted him to run the Western Blot and the CD-57 tests. Doubly disappointed because it will be about a month to get into the infectious disease doctor.

Wednesday, February 14, 2007
Being an ever impatient American, waiting a month seems pretty unacceptable (no regard to the fact that if it is Lyme I have had it for ~7 years – more on that another day) so onto the family practice doctor we use. Of course I suspected that this would be pretty much the same outcome as the neuro visit since no one gets Lyme disease in Texas, and thus has no one has any knowledge/experience with the disease (CDC Lyme Map). Quite to my surprise, on showing him the pictures of my back and suggesting Bartonella he agreed that is exactly what it looks like (and before I showed him the comparison pictures). I also explained that I have had an ELISA Lyme test which had come back negative, but I would like the more accurate Western Blot and CD-57 tests done. He was definitely familiar with the Western Blot (and seemed to at least have heard of the CD-57 test), and agreed both should be run. The longest wait was for the LabCorp techs figuring out what to draw since their on-site manual did not cover the CD-57 (and had never drawn for either type of test). Hopefully I can have the results back in a couple of weeks.